Navigating A Medical Maze

May 10, 2006|By ALISON FREEHLING Daily Press

Special aides help cancer patients adrift in unfamiliar waters

When Kristin Harman started chemotherapy in December, she braced herself for nausea and exhaustion. What she didn't expect was searing bone pain that struck from head to toe, including an ache in her breastbone that felt like a heart attack.

But Harman didn't call a doctor or family member. Instead, the 25-year-old Newport News woman turned to Glenda Williamson, her patient navigator at Sentara CarePlex Hospital in Hampton -- one of a new and quickly growing breed of cancer support employees at hospitals.

Williamson, a longtime nurse for cancer patients, now works as a single point of contact for people struggling with a maze of doctors' appointments, treatment choices and insurance questions. She guides about 150 patients through everything from scheduling first appointments to finding support groups.

Like many patients, Harman has called or e-mailed often since she was diagnosed with Hodgkin's disease -- cancer of the body's lymphatic system -- last November. When she asked about the bone pain, Williamson told her it was a side effect of a drug to make her bone marrow create more cells to guard against infection.

"So now when I hurt, I know it's working," Harman said. She also has asked for advice on insurance paperwork, medical tests, her fitness routine and feelings of depression. "A lot of times I may not have time -- or privacy -- to ask a doctor these kind of personal questions, but Glenda is always there," she said. "I wouldn't have such a positive outlook without her."

The patient navigator concept, a free service, is catching on across the country. Some hospitals have used it specifically to reach out to minorities and patients without health insurance, both groups that tend not to follow through with treatment and have lower survival rates. Last summer, President Bush authorized a $25 million grant program to expand such services nationwide.

Navigators can be nurses, social workers or lay people. They can arrange transportation and childcare, explain therapies -- with help from translators if necessary -- and explore options such as applying for reduced-cost medicine. Early results from a hospital in Harlem, N.Y., suggests the extra support can push up survival rates in minority patients.

But navigators don't limit themselves to certain types of patients. No matter what a person's race or income level, a cancer diagnosis is bewildering, said Yvonne Pike, the breast cancer patient navigator at Riverside Regional Medical Center in Newport News.

"There are multiple tests to do and so many doctors to see -- primary care doctors, radiologists, surgeons, oncologists and that's not all," Pike said. "People just need direction. They need one person as a touch point if there is any aspect of care they're confused about."

Pike started her job last fall and has about 50 patients. Riverside, which also funds a cancer nurse educator, is talking about adding navigators for patients with lung, thoracic, colon and possibly gynecological tumors. Eventually, Pike also expects the service to spread to other chronic illnesses such as diabetes and heart disease. "I really think cancer is just what happened to be the starting point," she said.

Doctors affiliated with Sentara and Riverside hospitals refer patients to navigators, who often call immediately after a diagnosis. Harman learned she had cancer on Nov. 9, after months of thinking a lump in a lymph node in her neck was simply an infection. She got her first call from Williamson -- one of two navigators at CarePlex -- on Nov. 10.

"I couldn't believe it was happening to me," Harman said. "In the beginning, I was worried about financial things and my job. Glenda told me, 'You don't focus on six months from now. You think about now. You take care of your health and relax.' I've gotten into that mindset now."

Often, navigators help with "busy work" that can sap patients' energy. At an appointment last week, Williamson helped Harman fill out an application for long-term disability benefits. Harman, a nurse, is scheduled to finish chemotherapy in June and hopes to go back to work during the summer.

"If you want to leave it with me, I'll see that the doctor fills it out," Williamson said. "I'll leave it with you," Harman said. "I know it will get done that way."

Insurance and disability paperwork is notoriously complicated, Williamson said. One day, she spent three hours on a single disability form. "People don't realize just how complex a cancer diagnosis is," she said.

With 20 years in nursing and 14 years of experience as an oncology nurse, Williamson can answer many questions from patients herself. If not, she'll get in touch with the right doctor. Her office offers brochures on support groups, patient rights, hospice services, pain control and even a how-to guide on shopping for wigs.

Still, at least one of her patients hasn't entirely followed her advice to focus on the present.

"Someday down the road," Harman said, "I'd like to do exactly what Glenda does."*

Helping hands

Locally, the three major healthcare companies have started patient navigator programs. For more information, call: